CCED

Tomorrow we take Jeremiah for his first appointment at Cincinnati Children's Hospital. He has been diagnosed with Eosinophilic Esophagitis and Eosinophilic Gastritis. Pronounce those.

This is a long awaited appointment at the Cincinnati Center for Eosinophilic Disorders. We got a referral from our GI Doctor in Dallas way back in May. It is only an hour long appointment with a PA but we are beyond excited to get our feet in the door here. It is the only center in the nation of its kind.

When I think about Jeremiah, I don't think about a kid whose sick or whose belly constantly hurts. He's just our Jeremiah.

He's the hilarious child who rode a camel with his dad last night, and when he got off yelled, "That was awesome. That was crazy awesome." He's also the kid who constantly tries to convince me that watching Blue's Clues or Backyardigans or whatever his current favorite show is will make him feel better. This convincing especially happens when he is crying because he was put in time-out.

Truth is, he doesn't eat. He is still on a bottle most of the time drinking a special supplement for nutrition. BUT that has never defined him in our minds. Yes, it's different. And boy are we seeing that with Eliza who loves to eat. But it's okay.

There are websites that say Jeremiah's quality of life will be diminished because of his disease, but we don't think so. We know that the older he gets, the harder it will be to not eat when everyone else is, but it doesn't mean life is less enjoyable. Our lives will probably never be wrapped around food, instead our time will be most meaningful when we are chucking the football at each other or pushing Eliza full speed in a wagon or reading books or whatever.

We choose happy.

The story of Eliza's birth

I found out I was pregnant on April 5^th.

We were surprised, once again, since the only time we had been trying to avoid pregnancy was the previous month so that we would not have a holiday baby.  But we were beyond excited that Jeremiah was going to have a little sibling.  I knew that because I developed preeclampsia so early with Jeremiah that I was at a higher risk of developing it again, but I was hopeful that this pregnancy would be different.

I also knew that if everything went the same, it was worth it. I knew I was willing to sacrifice a lot to bring a healthy baby into this world.

In June, we found out we were having a girl. I was in shock. It had never crossed my mind that we might have a girl. When the tech pulled the area between the legs up on the screen, she asked what we thought. I could not believe there were no boy parts, I just kept asking again and again to be sure. I could not believe I would have my Eliza. A girl named after my grandmother who was so dear to me.

I was going to the doctor every other week at this point to make sure my blood pressure and protein were under control.  So when we were planning on going to Kentucky for 3 weeks in August, I had to make sure the doctor approved. When we came back from our trip, and I went to my appointment a few days later, on August 26^th, my blood pressure was high. Because I was also experiencing some headaches, I had to head to the hospital. I was in shock. The doctor had said that he thought the earliest I would develop preeclampsia would be around 28 weeks. I was only 25 weeks.

I started a 24 hour urine in the hospital but was able to go home on bed rest because my pressures came down. On Monday at my follow up appointment, I learned that the protein in my urine was elevated, and I did indeed have preeclampsia.  Thus began bed rest.

Immediately I had no idea how this was going to work with an 18 month old. I felt so torn over how I could pick one child over the other. And I grieved for the time I knew I would lose with Jeremiah.  When my mother-in-law suggested she come down, I was beyond thrilled. God provided. I love Joel and to think that the woman who helped shaped him would now help shape my son was amazing. The time when Debbie was here was so precious. We had so many incredible conversations and I feel like we grew so close.  I would not trade that time for anything.

I had a few more short periods in the hospital during September and the beginning of October…2 afternoons and one overnight trip. But on October 19^th, when I still had a 3 day migraine and seemed to be losing a little vision, I knew that I might have to stay a little longer. I was admitted to the hospital that night and was there for the next 5 weeks. 

The first week was absolutely terrible. I had a headache that didn’t allow me to do anything but lay in the dark. I saw a neurologist who wanted to try a variety of medicines, most of which made me feel worse. One day, he wanted to try Reglan, every 15 minutes for 5 hours. It was honestly one of the worst days of my life. I felt so antsy, and I couldn’t do anything about it. I learned later from my dad that because of the effects Reglan has, it was used as a drug of torture for some time. Luckily the headache finally broke.

At 33 weeks, I had steroids for Eliza’s lungs because once again the doctor thought he would have to deliver. I continued to have elevated protein in my urine most of the time and to have liver enzymes that went up and down.  I also seemed to have times where I could not control my blood pressure, thus my doctor didn’t think it was a good idea to let me go home.  So I stayed.  At 34 weeks or so, I started having contractions and dilated to a 3, once again thinking it was time. But a little IV fluid stopped the labor.

I saw Jeremiah twice a day, thanks to my mom who brought him up every morning. To know how sacrificial her love was during this time is humbling. The last 3 weeks I was there, I was able to take wheel chair rides so we would go look at the helicopter or go outside to this little garden. At night, Joel and I would go on dates to the cafeteria. I got to know a few of the nurses pretty well and developed a routine that kept me sane. There were days when I knew I could only make it to the next hour or minute so I took it moment by moment. I ate 95% of my meals alone, something that was really hard. 

I spent a lot of time reading and reflecting.  God brought me to Psalm 13 and reminded me that in the hardest times, we can still trust his goodness and his salvation. I used an ultrasound picture of Eliza as a bookmark to remind myself the prize at the end of all this. Around 35 weeks, we set a date for induction, knowing that the baby would most likely be healthy and that I couldn’t continue like this.

But the next day, the doctor pushed the date back a few days. It was honestly heartbreaking. To most people 4 days seems so short, but at that point, it felt like a lifetime. At least we saw the light at the end of the tunnel. So we made a 10 day countdown on my board and all of the nurses were so supportive. 

I began to get nervous again. With Jeremiah, my induction was terrible. My blood pressure would not stabilize, and although Jeremiah was delivered by a midwife, the doctor in the room kept screaming that I was going to seize. It was incredibly stressful and I had to be on mag sulfate afterward and stayed in the hospital for another week. I was so nervous it would happen again. The night before the induction I took my sleeping pill but didn’t really sleep. 

At 6 am the next day, November 21^st, I was wheeled to a different room and started the pitocin. At 11 am, I was dilated to 4 and the doctor broke my water. I also decided to get the epidural at this time even though I wasn’t in pain yet. I knew I wanted to be as mellow as possible.  I’m glad that I did because Joel and I were able to relax that whole day and just watch TV and enjoy each other. By 5:30 pm, I was only at a 6. I was pretty bummed but knew it would happen at some point. At 6:40 before shift change, my nurse checked me one more time and I was a 10, ready to start pushing!

I was beyond excited because I really loved my nurse and wanted her to be a part of the delivery. The doctor arrived around 7 and I began to push. At 7:21 Eliza entered the world, staring at her surroundings. She was healthy as could be and my blood pressure came down quickly.  I was able to hold her for what felt like forever before they even bathed her.

It was amazing. I could not believe that she was here.  I could not believe that she was healthy or that I was healthy. I realized that everything, the bed rest, the hospital stay, everything was worth it for those moments of bliss as I held my daughter against my chest for the first time.